The Agony and the Ecstacy of Parenting a Child with Intensive Needs
by Dick Sobsey
This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways. To read more: http://networkedblogs.com/NMw4h
An article posted to the St. Albert Gazette explains how the family of a 13-year old foster child, who died shortly after leaving foster care, is seeking funding and payments for a lawyer to represent them in an inquiry into her death. The inquiry is meant to shed light on the girl’s death, with the aim of preventing further foster-care related injury or death.
Samantha Martin died in December 2006 after collapsing from an apparent heart attack. The inquiry is supposed to determine what caused the girl’s cardiac arrest.
Martin lived in foster care for most of her life; she was born with a rare chromosomal disorder and the government insisted the Martin family place her there to receive the necessary medical supports.
The Importance of Being Innocenct: Why We Worry About Children
Joanne Faulkner’s recently published book on childhood, The Importance of Being Innocent, was the topic of an Australian Broadcasting Corporation talk show segment today. You can here the interview here; here is the url directly:
Dr. Faulkner is a member of the Living Archives on Eugenics in Western Canada team. She is currently a postdoctoral fellow in philosophy at the University of New South Wales, and formerly held a Killam Postdoctoral Fellowship at the University of Alberta.
This post is intended mostly for parents of children (including adult children) with disabilities and other family members in their families. There is a new web-based discussion group called the Sustainable Family Care Forum that is part of research project that examines how families balance the demands of work and other life challenges with their roles and responsibilities of raising children with disabilities. If you are a parent or family member who might be interested in taking part, please take a look at the forum and consider joining in. If you know of others who might be interested, please pass on this information to them. Thanks!
I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.
1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.
2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses. Continue reading →